RE: Melinda/Re: Topical hormones?

[Guest guest]

And I also am going to show this article to my new vulvar

specialist, Dr. Lori Boardman and see if she will prescribe the “T”

for me. I have already been using the “E”. Unfortunately I am a

very difficult case because I started out with Pudendal Neuropathy and the

pudendal nerve also ruined the nerve endings in the vestibule. I did not have

any Vulvodynia or Vestibulitis before I had the Pudendal Neuropathy.

Unfortunately, when I had the decompression surgery for the pudendal nerve, I

also had a vestibulectomy (which I would highly recommend). It worked

wonderfully for three months. Almost from the day it was done, all pain,

tenderness, etc. was gone. I had the q-tip test done at 2 months post surgery.

But then, UGH! At three months, because, and only because of the pudendal nerve

was still inflamed, all the nerve endings in the vestibule grew back. So I am

back where I started from. If I had only the vestibulitis, and NOT the pudendal

neuropathy, I would have been completely cured. That is why I highly recommend

a vestibulectomy, which contrary to what has been said, is a very easy surgery,

with very little post recovery. I had ten stitches, barely had any pain from

the surgery, and like I said was almost completely pain free immediately.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of millburytimes

Sent: Thursday, March 06, 2008 2:43 PM

To: VulvarDisorders

Subject: Melinda/Re: Topical hormones?

Melinda

- that was a great article. I reposted part of it below, because some of his diagnoses

seem to be right on. I don’t think any of his treatments relate to

pudendal neuropathy, but they certainly do for Vulvodynia and Vestibulitis. And

he believes in Vestibulectomies and Botox, which most doctors do not. In fact,

his pelvic floor diagnoses are exactly what I am now experiencing and the

treatment that I am now trying. It was nice to see it verified, and I am going

to show this article to my pain management doctor.

nne

Atrophic Vestibulodyni:” Frequently caused by oral contraceptive pills,

surgical removal of the ovaries, chemotherapy for breast cancer, hormonal

treatment of endometriosis, and menopause. There is evidence that the vestibule

needs adequate levels of both estrogen and testosterone and these levels are

frequently altered in with the medications/conditions listed above. Distinctive

features of “atrophic vestibulodynia” are the symptoms occur

gradually and the entire vestibule is affected. There are low levels of

estrogen, and free testosterone and elevated sex-hormone binding globulin

levels on blood work.

Just stopping the OCPs does not cause resolution of the

symptoms, nor does applying hormonal creams without stopping the Pill. I use a

combination estrogen and testosterone gel compounded together after stopping

the Pill. In my opinion, every woman who has vestibulodynia and is on OCPs

should stop the pill and try the estrogen/testosterone gel as first line treatment.

“Pelvic floor dysfunction” (aka levator ani syndrome, pelvic

floor hypertonicity, vaginismus). In this condition, the muscles that surround

the vestibule are tight and tender. This can cause tenderness and redness of the

vestibule, without there being an intrinsic problem of the tissue of the

vestibule. Often the back part of the vestibule (near the perineum) is affected

more than the front part (near the urethra). Pelvic floor dysfunction can be

detected by a thorough exam of the levator ani muscles. Treatments include

intravaginal physical therapy, warm baths, muscle relaxants such as Valium,

biofeedback, and Botox which is used to augment the physical therapy.

“Neuronal proliferation” (NP) A condition in which the density

of nerve ending is increased in the vestibular mucosa. I split this group into

primary (pain since the first attempt at intercourse) and secondary (acquired

after some pain free interval.) There is good evidence that primary NP is a

congenital problem (IE a birth defect) while secondary NP can be caused by an allergic or irritant

reaction (frequently to vaginal anti-fungal creams.) Treatments for secondary

NP include tri-cyclic anti-depressants, lidocaine, capsaicin, and surgical

removal of the affected tissue (vulvar vestibulectomy with vaginal advancement.)

In my opinion (but there are many vulvar specialist who will disagree) primary

NP can only be cured with vestibulectomy.

“Vaginitis” Sometimes there is inflammation so severe in the

vagina that the inflammatory white blood cells pour out of the vagina and coat

the vestibule and cause a secondary vestibulitis. There are two categories of vaginitis:

infectious and sterile (non-infectious). Infectious vaginitis is caused by an

organism such as yeast and trichomonas- but not bacterial vaginitis

(Gardnerella).

Sterile vaginitis can be caused by exposure to chemicals such as vaginal

creams, spermicides, lubricants, latex in condoms. In addition, sterile

vaginitis can be caused by lack of estrogen (see atrophic vestibulitis above

for the causes) and a condition called desquamative inflammatory vaginitis

(DIV). The cause of DIV is unknown but it is characterized by copious yellowish

discharge. Although DIV is difficult to “cure,” it frequently can

be treated with a combination of intravaginal steroids, Clindamycin- an

antibiotic, and estrogen. In addition, even though I think that infectious

vaginitis is only infrequently the cause of vestibulodynia, almost all women

with vestibulodynia have been unnecessarily subjected to many, many courses of

antibiotics and anti-fungals by well-intentioned health care providers.

Vulvar Dermatoses: Several different dermatologic conditions of the vulva

can cause vestibulodynia. The most common disease affecting approximately 1% of

all women is lichen sclerosus. The second most common is erosive lichen planus.

More rare diseases include plasma cell vulvitis and mucous membrane pemphigoid.

(Please see the winter 2007 edition of the NVA newsletter for a more thorough

description of these diseases.)

“Irritant or Allergic Contact Vestibulitis.” Unfortunately,

women expose their vulvas to dozens of different chemicals almost every day.

Even the most gentle of soaps have many different chemicals in the form of

perfumes, dyes, and preservatives. Toilet paper, sanitary pads, tampons all

contain chemicals. Laundry detergents and fabric softeners used to wash

underwear and towels add to this chemical burden. A woman can be sensitive or

allergic to any one of these chemicals and this can cause inflammation and pain

in the vestibule.

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of mfwaskow

Sent: Thursday, March 06, 2008 12:51 PM

To: VulvarDisorders

Subject: Re: Topical hormones?

Hi Janet,

The topical is 0.03% Estradiol/0.1% Testosterone. My estrogen and testosterone

levels

were low, because I was a long-term OCP user. I discontinued the pill and used

the

topical for 3 months. My skin improved, and my hormone levels are within normal

limits.

I went off the topical to see if my hormone levels and my skin will remain

normal without

it. I am going to be rechecked in a month.

For more information go to www.ourgyn.com and scroll down to " New

Diagnoses for

Vestibular Pain. "

Melinda

>

> > He did not bring up surgery for me either. The only meds he

> > prescribed for me were a

> > topical Estrogen/Testosterone cream and Valium. I am not on

> > either anymore.

> >

> > Melinda

>